The CARRA Podcast – Détails, épisodes et analyse

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The CARRA Podcast

Childhood Arthritis and Rheumatology Research Alliance (CARRA)

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Fréquence : 1 épisode/64j. Total Éps: 9

If you’re a rheumatologist, a pediatric rheumatologist, a researcher or a patient/caregiver living with a pediatric rheumatic disease, you need to know about the Childhood Arthritis and Rheumatology Research Alliance (CARRA). We are doctors, researchers and patients all working together to prevent, treat and cure pediatric rheumatic diseases and related autoimmune diseases.

In each episode, we will interview a member of the CARRA community to hear research updates, explore new ideas and learn how we can all work to create a world free of limitations for children with pediatric rheumatic diseases and related autoimmune diseases.

The CARRA Podcast is hosted by Claudette Johnson.

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Données mises à jour le 04/07/2026

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Translational Science with Dr. Joni Rutter

Saison 1 · Épisode 9

jeudi 3 avril 2025 • Durée 26:06

What is translational science and how does it impact our CARRA community? To answer these questions, we turn to Dr. Joni L. Rutter, the Director of the National Center for Advancing Translational Sciences (NCATS) at the National Institutes of Health (NIH). Tune in to hear about how she’s focused on breaking down barriers and speeding up the time it takes to get treatments from the lab to patients. Join us to learn about what translational science means for pediatric rheumatology, why it’s so important for rare diseases, and how data science could be used to help find treatments for rare diseases.

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CARRA Live at ACR

Saison 1 · Épisode 8

lundi 30 décembre 2024 • Durée 09:06

In this live episode recorded at the CARRA Reception at ACR in Washington, D.C., Claudette Johnson interviews Dr. Stacy Ardoin, the president of CARRA.

Their interview highlights some of the most exciting developments in pediatric rheumatology research today – from using the CARRA Registry to conduct comparative effectiveness research to determine which drug works best for which patient to harnessing the potential of biosamples to help answer some of the most important questions in that researchers and patients have.

Dr. Ardoin, who has been involved with CARRA since she was a fellow, also shares a few ways for patients and families to get involved with CARRA.

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The Burden of School-Related Concerns with Dr. Mia Chandler

Saison 1 · Épisode 7

lundi 9 septembre 2024 • Durée 12:22

For kids managing a rheumatic disease, school can be a frustrating cycle of missed lessons and makeup work. While a 504 Plan for special accommodations can certainly help, families living with pediatric rheumatic diseases know that school-related challenges are inevitable.

There is very little evidence about the burden of school-related issues and the exact barriers that kids with pediatric rheumatic diseases face.

Mia Chandler, M.D, M.P.H, a pediatric rheumatologist at Boston Children’s Hospital, aims to change that. Last year, Dr. Chandler won a CARRA-Arthritis Foundation Career Development Award to support her research into Juvenile Idiopathic Arthritis and School-Related Concerns. Her research will assess the burden of school-related concerns – beyond physical and academic challenges to include social and psychological issues.

Learn more about her important research and the challenges that kids face at school in this special episode of the CARRA Podcast.

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Pediatric Scleroderma with Dr. Kathryn Torok

Saison 1 · Épisode 6

mercredi 17 juillet 2024 • Durée 27:18

This episode focuses on scleroderma, a disease that the host of the CARRA Podcast was diagnosed with at nine years old. To help explain what the disease is all about, we turn to Dr. Kathryn Torok, Associate Professor of Pediatrics and Clinical and Translational Science. Dr. Torok is the director of the Pediatric Scleroderma Clinic at UPMC Children's Hospital of Pittsburgh, where she is also the co-director of the Pediatric Craniofacial Scleroderma Clinic.

Dr. Torok explains the different types of scleroderma and how doctors diagnose them, as well as the possible treatment options and the challenges that patients and physicians face with this rare disease. As a leading researcher in pediatric scleroderma who co-leads CARRA's Scleroderma Workgroup, Dr. Torok also shares the latest exciting updates in her scleroderma research.

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The View from a High Schooler

Saison 1 · Épisode 5

jeudi 4 avril 2024 • Durée 16:44

Have you ever wondered what it’s like to be a kid with a rare autoimmune disease?

In this special episode, the host of The CARRA Podcast, who is a teenager living with a rare autoimmune disease, interviews another teenager who has a rare autoimmune disease about their experiences with school, sports, friends, and medical treatments. They also share their frustrations, hopes and new perspectives on life.

Spencer Ableman shares his journey with vasculitis, from a terrifying and unexpected health crisis to accepting this tough diagnosis and learning to embrace life with new challenges. Spencer, who has an incredibly optimistic outlook, has a story that is both informative and uplifting.

Spencer shares his experiences on everything from competing in a cross-country race with a port in his chest to explaining his condition to other teenagers. It hasn’t been an easy path, but he has found some silver linings – from having insider knowledge in his AP Bio class to seeing his friends waiting at the finish line of his first cross-country race.

“Even though it may seem like you're in the dark there's a light at the end of the tunnel and you just got to keep your head up if you want to see it,” says Spencer.

These two remarkable teens, who met at CARRA’s Annual Scientific Meeting, discuss what research means to them and why they are involved with CARRA.

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Mental Health Part Two: Exploring Solutions

jeudi 7 mars 2024 • Durée 23:30

Kids with rheumatic and autoimmune diseases rates are at greater risk of developing anxiety and depression.

In a special two-part series on mental health and mental health awareness, The CARRA Podcast explores how kids living with autoimmune diseases can face additional mental health issues.

In this second episode on mental health, we explore how researchers are working to provide better support to children and teens living with rheumatic and autoimmune diseases.

The CARRA Podcast host, Claudette Johnson, sits down with Dr. Andrea Knight to learn more about what is being done to help kids cope with mental health challenges. Dr. Knight is a Clinician-Investigator in the Division of Rheumatology and Associate Scientist in the Neurosciences and Mental Health program at The Hospital for Sick Children (SickKids) in Toronto. She is also the Chair of the Systemic Lupus Erythematosus (SLE) Committee for CARRA.

Dr. Knight got interested in mental health early in her career when she saw many teenagers struggling with adjusting to their diagnosis, whether it be arthritis or lupus. Those early experiences shaped her interest in mental health research for kids and teens with pediatric rheumatic diseases.

The initial focus of Dr. Knight’s research was to examine the prevalence of mental health issues among patients, particularly young adolescents with lupus. She wanted to see how common symptoms such as depression, anxiety, and thoughts of self-harm were.

Her findings revealed that these symptoms were quite common among adolescents with lupus, raising concerns about the extent of the issue. This study underscored the need to develop tailored interventions to support adolescents with lupus in managing their mental health.

That first study was about 10 years ago, and Dr. Knight is pleased that things have improved since then.

The CARRA community, rheumatologists, patients and parents, mental health providers, and other researchers are really talking about mental health as an important issue – and that wasn't happening 10 years ago.

One of the things that CARRA as a community has made strides with is doing research into mental health and supporting researchers to really get at the important issues, Dr. Knight explained.

Mental Health Part 1: Understanding the Problem

jeudi 8 février 2024 • Durée 29:24

It's no secret that mental health challenges are on the rise for children and teenagers, but imagine being a kid with a complex, chronic health condition.

In a special two-part series on mental health, The CARRA Podcast explores how kids living with autoimmune diseases can face additional mental health challenges. The first episode takes a look at this pervasive problem, and in the second episode, we’ll have a conversation about solutions and examine what is being done to help kids and teenagers.

The CARRA Podcast host, Claudette Johnson, explores how doctor’s appointments, treatments, endless tests, and medications are part of daily life for kids with a rare autoimmune diseases. Missing school, sitting out from sports, not having friends who understand the child’s condition can be lonely and mentally challenging – on top of the struggles every kid and teenager faces.

In Mental Health - Part One, Claudette talks with a pediatric psychologist who is focused on helping kids living with pediatric rheumatic diseases. Dr. Alana Goldstein Lever is a team psychologist in the Department of Rheumatology, where she works with children, teens, and young adults with rheumatic diseases. She is also an assistant professor at the Ohio State University.

Dr. Goldstein Lever explains how and why mental health issues, such as depression and anxiety, are on the rise in young people and why kids with pediatric rheumatic disease face additional challenges that can strain their mental health, such as medication side effects and physical limitations like missing recess or sports. They also may feel lonely or isolated due to living with a rare condition that their friends have never heard of and don't know how to pronounce.

This episode also examines the intersection of chronic illness, physical limitations, pain, and treatment challenges.

Dr. Goldstein Lever and Claudette Johnson discuss how there is an increasing recognition of these very significant issues facing young people and of the importance of mental health overall.

For example, Nationwide Children's Hospital has a campaign called “On Your Sleeves,” which focuses on really giving a voice to mental health issues. The hospital also has an innovative program where Dr. Goldstein Lever serves in a full-time role as the team psychologist in the Department of Rheumatology.

What is a Registry?

vendredi 19 janvier 2024 • Durée 17:12

In this episode, you will learn what a registry is, the roles that registries play in research, and how patients and families can help support them.

In the second episode of The CARRA Podcast, Claudette Johnson talks with Dr. Mary Beth Son, who is the Co-PI of the CARRA Registry. Dr. Son is Clinical Chief of the Division of Immunology and Section Chief of the Rheumatology Program at Boston Children's Hospital, as well as an Associate Professor of Pediatrics at Harvard Medical School.

The Childhood Arthritis and Rheumatology Research Alliance (CARRA) has the largest ongoing, observational registry in North America that collects clinical and patient-reported information about children and young adults with pediatric-onset rheumatic diseases. The CARRA Registry has more than 14,000 patients enrolled at 70 sites. It also serves as a biosample repository for select translational studies that leverage registry data.

The CARRA registry is a large registry, and it is used to study pediatric rheumatic disease. It has a lot of people participating and supporting it. At the moment, there are three main diseases that we collect data on, and that includes juvenile arthritis, lupus, and juvenile dermatomyositis. These are three of the more common diseases that we see in pediatric rheumatology clinics.

The real advantage of studying pediatric rheumatic disease in a registry is that these are rare diseases. We really want to be able to answer the kinds of questions that patients and their families have, but any one center has a very difficult time robustly answering questions about these diseases because they're rare. If you pool everybody in, then you're really able to study things and hopefully get to some meaningful answers for patients and their families.

Dr. Son also explains exactly how the registry works, what kind of information is collected and what the roles of patients and families are. She also explains the importance of biosamples in pediatric rheumatic disease research.

Claudette and Dr. Son tackle a wide variety of topics related to the registry, including AI and data privacy.

Learn more about the CARRA Registry and ongoing research using the registry and biorepositories.

What is the Childhood Arthritis and Rheumatology Research Alliance (CARRA)?

Saison 1 · Épisode 1

lundi 6 novembre 2023 • Durée 18:15

Meet a pediatric rheumatologist who helped pioneer collaborative research in pediatric rheumatic and related autoimmune diseases.

Dr. Yukiko Kimura helped create a collaborative research network called the Childhood Arthritis and Rheumatology Research Alliance (CARRA) with a small group of dedicated physicians working in pediatric rheumatology. From the very beginning, they partnered with patients and families at every stage of research.

Learn about the growth of this pediatric rheumatology research organization and what the future holds for CARRA, as the organization continues to accelerate research and drive advances in evidence-based medicine, while also creating career development opportunities for pediatric rheumatologists.

In this first episode of The CARRA Podcast, Claudette Johnson sits down with Dr. Kimura to learn more about how CARRA has been a trailblazer in patient-centered research, while also supporting the field of pediatric rheumatology. Dr. Kimura is the division chief of pediatric rheumatology at Hackensack Meridian Health in New Jersey.

Dr. Kimura explains how pediatric rheumatology was very different back in the late 1990s when she finished her fellowship in pediatric rheumatology than it is today. At the time, less than half of pediatric rheumatology patients were being cared for by a pediatric rheumatologist. More than a third of medical schools in the United States, didn't have even one pediatric rheumatologist on their faculty, and less than 10 fellows a year were graduating across the entire United States.

It was very challenging to do research because there simply weren’t enough pediatric rheumatologists.

A big reason for starting CARRA was that pediatric rheumatologists had a lot of questions about pediatric rheumatic diseases and how to achieve the best outcomes for their patients.

Pediatric rheumatologists around the country realized that there were so many questions to be answered, but they had no way to answer them. They realized that they needed to come together as a group and collaborate with each other to be able to do research.

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The CARRA Podcast – Détails, épisodes et analyse

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